In The Politics of Autism, I discuss state services for people with intellectual and developmental disabilities.
Many children and adults with Autism Spectrum Disorder (ASD) need services and support across their lifespans. Currently many residential and community living supports are delivered through state intellectual and developmental disabilities (IDD) service systems.
A random sample of 11,947 individual users of adult IDD services from 25 states that included 1,459 individuals with an autism diagnosis was analyzed for this study looking at demographic characteristics and living arrangements. Comparisons were made between adults with and without ASD who receive services through the IDD service system.
Overall, individuals with an ASD diagnosis were younger on average, had a higher percentage of males, and had higher percentages of the No Intellectual Disabilities (ID) and Severe ID categories compared to individuals without an ASD diagnosis. There was a significant association between the type of living arrangement and ASD status with a higher percentage of participants with ASD living in a family member’s home, but a lower percentage of people with ASD living in agency apartments, in their own home or an “other” living arrangement. However, with age, gender, and level of ID and challenging behavior taken into account, people with ASD had 29% higher odds of living in a family member’s home but 42% lower odds of living in their own home when compared to people with other developmental disabilities who received residential services through state IDD service systems. [emphasis added]
There are key differences in access and utilization of residential services between people with ASD and people without ASD. While state developmental disabilities systems are serving individuals with ASD there are potential influences of state policies regarding ASD eligibility for various residential services. Implications for future research are discussed.The article discusses Home and Community Based Services (HCBS) and Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID).
The state in which a person lives can be a strong predictor of the type of services available and the ability of an individual with a disability to access that service. It is possible that residential outcomes for individuals with ASD mirrors the national data on IDD, in that great disparities exist across states (Ticha, Hewitt, Nord, & Larson, 2013). In this study,there was variation across states with regard to the percentage of sample members who had a diagnosis of ASD. This variation has been discussed in previous research on both ID and ASD (Hall-Lande et al., 2011; Hewitt et al., 2012; Ticha et al., 2012; Ticha et al., 2013) in which the eligibility criteria for ICF/IID and HCBS have been identified and used to predict service utilization of HCBS.
Given that there is no national eligibility determination, states do not have the same eligibility criteria for individuals with ASD to access IDD services. In some states, having a diagnosis of ASD is not enough to be determined eligible for ICF/IID and HCBS. Other states have eligibility criteria that include a related conditions clause that allows eligibility for people with ASD. Some states require a certain IQ score in order to be eligible for services. A few states have ASD-specific HCBS that are designed only for people with ASD. Yet, in other states people with ASD access long term services and support through programs offered in mental health service systems (notIDD service systems) or through Medicaid State Plan services. Thus, it is highly probable that state policy had an effect on access to the residential services utilized by people with ASD in this study. The nature of this study was to provide a national picture, and state by state analyses were not completed that looked at specific state eligibility criteria in a given state and the number of people with ASD that were served in specific residential types. A previous study (Hewitt et al., 2012) found that states with specific ASD HCBS programs for children (CO, IN, KS, MD, MA, MO, MT, NE, NY, SC, WI) and adults (PA and IN) served more people with ASD than other states and states with related conditions clauses served more people with ASD than states without such clauses. This study included many of the same states but only an adult sample. At the time of the current study, the sample for the state of IN included 98% HCBS recipients and in PA only 64% were HCBS recipients. Overall about 80% of the NCI sample for the study year were HCBS recipients, 11% were ICF recipients and 9% received some other type of service. Given HCBS services are more often delivered inside the family home than outside the family home, it is likely that the number of service recipients with ASD that receive services inside their family home influenced the fact that so many sample members were receiving HCBS. Further exploration of how variations in state policy related to eligibility and access to residential and other long term services and supports is important to being able to gain better understanding of state variability specific to residential service type
- Hall-Lande, J., Hewitt, A., & Moseley, C. (2011). Home and community based services for children and adults with autism spectrum disorders: A national review. University of Minnesota December.
- Hewitt, A., Stancliffe, R., Johnson Sirek, A., Hall-Lande, J., Taub, S., Engler, J., et al. (2012). Characteristics of adults with autism spectrum disorder who use adult developmental disability services: Results from 25 US states. Research in Autism Spectrum Disorders, 6(2), 741–751.
- Ticha, R., Lakin, C., Larson, S., Stancliffe, R., Taub, S., Engler, J., et al. (2012). Correlates of everyday choice and support related choice for 8, 892 randomly sampled adults with intellectual and developmental disabilities in 19 states. Intellectual and Developmental Disabilities, 50(6), 486–504.
- Ticha, R., Hewitt, A., Nord, D., & Larson, S. (2013). System and individual outcomes and their predictors in services and support for people with IDD.Intellectual and Developmental Disabilities, 51(5), 298–315.